Epilepsy

Keppra & I: A Love-Hate Relationship

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I was diagnosed with Epilepsy and released from the hospital in the nick of time for my birthday & Christmas to follow. Needless to say, it was a rather subdued celebration within myself. Still emotionally and physically adjusting. I had been given medication to control my seizures that just wasn’t doing much good. The side effects were a terrible companion. Like a friend with an ulterior motive. Haha. All while adjusting, I wasn’t prepared for the next set of trials that was headed our way. My car that I had crashed after suffering the seizure that led to my diagnosis, I had to say good-bye to. We just couldn’t afford the repairs and driving was no longer an option. It was my first car. A little gold Kia Sephia. I called the car “Nugget”. It wasn’t by any means luxurious but that Kia and I had good times while it lasted. Losing my privilege to drive felt like a slight amputation as I watched the person who offered to purchase the car, drive away never to be seen again. Soon after, I left my job to take time to recover. No longer working felt like another strike at my independence as well. What would I do now? How could I contribute? Then came the moment when we could no longer afford to live in our home. Our family offering to take us in until we could get back on our feet. All of my dreams and time that I took making our house a home. The heaviness weighing down my back suddenly felt as though it were raining boulders on top of what was already there. How could I adjust to my diagnosis when it felt as though my whole world was crashing down? The first night in our family’s home, I could not contain the ocean of tears washing down my face. Confused and angry. Broken and empty of hope. My medication was no match for the numerous seizures that plagued me during that time. My husband witnessed me seize for his very first time. It was so painful for the both of us all the while all we’d endured thus far. After speaking with my doctor, we had decided it was time to talk about different seizure medication to help me. What I was on before, the side effects were unbearable and weak in its attempts to wrangle my seizures. I was informed that all medications come with side effects. There was just no avoiding them. Discouraging as I had not much emotional strength to fight the side effects given our circumstances. However, I was then introduced to Keppra XR. Knowing nothing about the medication, I was vaguely given the run down of side effects to expect. It sounded no different than what I had been told of with the last medication. Yet I was informed it was a newer drug that had better seizure control results and less dangers compared to other medications. I was introduced to Keppra XR having no idea that I had just been introduced to a bucking bronco of side effects to follow suit. The dosage amount increased as the seizures fought to break through. The side effects also challenged in turn. Even so, my seizures began to subside slightly but not entirely. Below is the list of Keppra XR Side Effects:

  • mood and behavior changes such as aggression, agitation, anger, anxiety, apathy, mood swings, depression, hostility, and irritability. A few people may get psychotic symptoms such as hallucinations (seeing or hearing things that are really not there), delusions (false or strange thoughts or beliefs) and unusual behavior.
  • extreme sleepiness, tiredness, and weakness
  • problems with muscle coordination (problems walking and moving)
  • sleepiness
  • weakness
  • dizziness

I experienced each and every side effect listed above. Most of them at a severe level. Had we not encountered the trials we were facing at that time, perhaps the side effects wouldn’t have been so harsh. But in my case, I was carrying quite a heavy load on my back. I cannot think of another time in my life that I had cried so many tears or felt so depressed and empty. My optimism and zest for life had just about abandoned me. I found myself not wanting to leave the house. My smile had faded into the shadows. My outlook on life was hazy and without form. It was suggested that I consider another medication. But I was beginning to experience a slight sense of relief from my seizures and I was tired of ‘abandoning ship’ so-to-speak in regards to medications. I was determined to overcome the side effects no matter how hard it was. No matter what it took. Battling the side effects, mainly the depression and anger was an uphill battle with plenty of obstacles awaiting me. From others that I’ve spoken to who’ve also been on Keppra or have given their child Keppra, anger and outbursts seemed to be the main concern. So much of a concern, some have found it to be too much to bare. I’ve battled and for the most part conquered the side effects. Keppra and I’s love-hate relationship is going on 3 years. 2500mgs each day alongside one other medication. With every ounce of inner strength I had left in me, with prayer and the abundance of love from my family, I learned to manage whatever side effect Keppra XR threw my way. Analyzing each one and discovering its weakness. Clinging to its positive opposite. For example:

  • Should I find myself depressed: I listed all the things to be thankful for
  • Should I find myself angry: I centered myself on what made me happy
  • Should I find myself tired & weak: I changed my diet and lifestyle to a healthier nutritious one. Filled with natural energy and strength.
  • Should I find myself without hope & faith: I encouraged myself back into the goal oriented dream pursuant person I once was and always had been.

I encourage this thought process for anyone reading this, experiencing the same things I experienced. Side effects can either defeat you or challenge you to become stronger. I’m truly thankful for what Keppra XR and my other medication is doing to help me lead an easier life with Epilepsy but its side effects, I won’t allow them to push me around and push me down. If they’re along for the ride, they’re going to take a backseat to my happy optimistic life.

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

7 Comments

  • Amanda

    My husband takes Keppra. I just let him read all of the comments and your story. The comments with vitamins and other things he can take, we plan to utilize.

  • Michele

    My son had nightmarish side effects from Keppra for 11 years. We have finally alleviated them with three supplements: Deplin (a prescription for L-Methylfolate), Vitamin B-6, and Magnesium (2 Slow-Mag tablets, twice a day.) He also takes D-3, because we don’t get enough sunlight in our part of the country. It took input from 3 different doctors (including one I e-mailed from far away) to get this combination, but he is now practically free from Keppra side effects!!!

  • Johana

    My son have seizures he has been taking keppra 2500mgsfor many years with zonizamide 400mgs this two medicines together work perfect for him I think every body act different I’m so happy with this two medication thank god. Cuz before he was take topiramate that is topamax works for few years and we have to change and try keppra ! be patient and believe in god don’t sleep late rest , drink a lot of water and think positive I will pray for all.

  • Mary Cooper

    My daughter is on Keppra and has been for several years. It took a long time and a lot of blood tests for the doc to admit it depletes vitamin d and the b vitamins. He finally said he new this but didn’t quite believe it until we got the blood tests on our own and proved it to him. She now has to take a vitamin d3, a multi vitamin and a b complex every day. Her blood tests show her levels are finally in the normal range and her keppra rage is gone. If she misses even 1 day of vitamins it is obvious by her level of hostility.

  • Jessica

    I have been on many different medicines for epilepsy for almost 16 years now. And none of the medications control me the way Keppra has.
    I’ve been taking Keppra for about 6 years, and yes I experience the side effects. But I would take that over seizures any day!

    Continue the fight to be seizure free. For me it feels liberating!

  • vicky holland

    i had all of this to very bad and feeling sick and being sick every day still do now not nice so i am with you tiffany i am on 3000mg a day zebinix 800mg and cloberzam 20mg hugs keep fighting them side affecks lovely take care.x

  • Margaret Tandy

    Your story is inspiring. I am going down a very similar road with keppra and you are spot on it really is a love/hate relationship with it. My doctor just said “What would you rather have seizures or the side effects” Guess it does come down to those two choices and the side effects win. I have heard so much about keppra and read a lot about it I have to say it scares me. I get horrid rages which come out of nowhere anger is a big issue as well as the depression. I have always been able to fight against any feelings of negativity but Keppra does take away that fight. I agree Keppra does lessen the seizures I very rarely have a tonic clonic. But too many small ones take it out of you and as I have found just as dangerous, my last one was last week and I had a pint glass on the table which ended up smashed all over the room with me in the middle of it. Your story has got me determined not to allow keppra to ruin my life and really has given me a sense of victory because I know I can fight this. Thank you so much for sharing Blessings to you and yours <3

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